Two sickos, a baby and a garden.

Carolyn has her hands full these days, does she ever. I’m experiencing some particularly nasty side effects of one of my chemo meds weakening my legs to the point of near collapse, and last week we found Princess, our cat, in severe distress requiring long stays at the vets and heroic efforts to save her life. On top of that, there’s the puppy we brought into our lives. She’s a wonderful addition to the family, but she’s a rambunctious puppy, demanding of attention and needing some training to stop her from biting us incessantly, ripping our clothes and our bodies. Then there’s the garden.

The Garden

Speaking of the garden. It’s unbelievable this year. We’ve been eating lettuce from the garden for weeks but now the peas are coming on strong and the broccoli, cauliflower, and kohlrabi are in the pot. Some of the raspberries are ready to pick, the tomatoes are coming on as well as the zucchini and cucumbers. We’ve never had much luck with root vegetables, but this year it looks like the potatoes, carrots and beets will produce lots of tasty treats. The garlic is a bit behind this year but should be ready to pick in a week or so.

The cedar trees are loaded with cones this year to the point where they’re dragging the branches down. My favourite flowers, the lilies, are opening everywhere on the garden and this year we have a rare pond iris bloom. Such a delightful show! The birds are active too and the squirrels are busy picking the not-yet-ripe cherries. Looking out the living room window right now I’m seeing an American goldfinch, a purple finch, a couple of woodpeckers going after the suet attached to the feeder and a congeries of species, mostly thrushes, towhees, chickadees, and finches. At the pond is where we more often see kinglets and warblers. Of course, hummingbirds dash about in their usual frenzy all over the garden. So much to eat these days for all the birds.

Me

It’s been tough lately. I’m in quite a bit of neuropathic pain from one of my chemo drugs, something I’ve already written about a couple of posts back. My legs want to give out on me and if I should ever get down on the ground, I can’t get back up on my own. It’s downright discouraging. One of the main problems with this is finding the right pain med to deal with it. Hydromorphone is ineffective against neuropathic pain although I’m always tempted to take it so that I get stoned enough to be able to sleep. But I don’t like that strategy so I’m looking to other ways of getting by. I’m cutting back on my hydromorphone and taking more acetaminophen. That seems to allow me to sleep better while avoiding some of the worse brain fog and intense fatigue that I get from the opiates.

It may be that some of the back and leg pain I’m feeling is from conditions other than those produced by myeloma or chemo. To see if there’s a mechanical issue, my local oncology GP has ordered an MRI to check things out. He also suggested I think about taking Gabapentin or Lyrica, but I’m not having anything to do with those drugs. They may help in some ways, but they can create lots of problems I don’t need. I’m talking to the palliative care people too and they may have suggestions. In the meantime we wait and hope the pain attenuates. I’m operating at a very reduced capacity at the moment. Must carry on, though. No point in quitting now.

Thank goodness I have Carolyn and the garden for solace.

Princess Pretty Paws

Princess is at least ten years old and has been very healthy since we got her two or three years ago. Last week we got the puppy and Princess disappeared. At first I thought there might be a connection, but Princess is not the kind of cat to run away. In any case, Carolyn found her upstairs a few days ago. She was obviously in distress. We think that she may have been hiding out in the crawlspace as she got sicker and sicker. So Carolyn immediately took her to the vet. Princess stayed there a few hours for observation and tests. The vet was at a loss to figure out what was wrong with her. The one real anomaly in her blood was a high bilirubin count indicating a liver problem. We thought it might be poisoning, but that wasn’t the case.

It turns out she has a serious problem with a bowel infection or something along those lines and she has inflamed organs. So what to do? Well, some people might have decided to put her down but that’s not our style. More tests and more again. She saw the vet three days last week as well as today, on Sunday. We have a great vet!

Princess has been on a feeding tube for three days now and we seem to have that under control. She’s on lots of meds that we give her at feeding time. Her fever has dropped, she’s eating (through the tube) and she’s getting more active. She’s not throwing up and she’s using the litter box. All good signs. So we carry on and see how it goes. We keep our fingers crossed. No point in giving up on her now!

Matilda (Tilly)

Matilda (Tilly)

Tilly is a Bernese Mountain Dog, Shepherd and Maremma Italian sheep dog cross. She’s nine weeks old and is a gift from our amazing daughters and their families. She has a great personality but like most puppies of that age is teething and biting is something she does indiscriminately. She plays rough. She bites whatever comes along: cardboard boxes, chewy toys, table legs, blankets, and us, of course. Carolyn’s arms are scratched up quite badly as you might expect. Mine are less so. We’ve found some puppy social classes for her and with some training she’ll be just fine. She’ll grow into a wonderful, mellow girl. For the moment though, she is a handful. There’s no turning our backs on her for a second. She’s very fond of the fountain next to the deck and lays on the rock taking a nip at the fountain from time to time. She’s figured out how to get under the deck and she goes from one end of it to the other under there. She figures that’s a real hoot. She loves her treats and is now responding readily to the sit command but she might just ignore that if she she wants to play, meaning attack and bite us. To be fair, she can be gentle too and plays by herself quite well. She’s not always bitey.

We’ll have to be very vigilant when Princess starts wandering around the house and property. We don’t want Tilly chasing her. It will be a challenge.

So there’s sorrow in the household at the moment but there’s a lot of joy and hope too. Be careful out there in the Time of Covid-19!

Describing Pain can be a Pain.

But first, how about a very short video of Princess drinking from the ‘fountain’ next to the deck? And how about following that with a picture of our new puppy? She comes home Saturday. Coming soonish, a second video about gardening and plant sales. Stay tuned.

Princess and the Fountain.
Puppy. No name yet.

So, I’ve written about this before, but it’s such an important part of my life right now that I can’t let it go. I, more than most people, understand that social convention governs a great deal of our behaviour. The study of social convention is on the curriculum of most introductory Sociology courses, so my familiarity with it goes a long way back. Convention and habit colour if not drive a lot of human interaction and that is true of our conversations as well as many other types of behaviour. We’ve come up with a number of conventions that, in my mind, work fine, but only if we don’t question them. For instance, asking “How are you?” is not really a query into the state of my health even though it does literally inquire about my wellbeing, doesn’t it? Needless to say, “How you doin’?” is a conventional and very common greeting. It’s not a question inquiring about pain now is it? The conventional answer to this greeting/question is “Fine.” “Hi, how are ya?” seems like the asker is interested in an answer, but mostly, that’s not the case. We’re supposed to say “Fine.” That’s it.

I don’t ask people how they are doing anymore. I mostly just say “Hello,” and get on with a conversation. For a while there, I would answer the question as though it were a real question. “How are you?” “Well, today, not so good,” I’d say. Or I’d say, “It depends.” That is not a satisfactory answer. I can tell that from the look on the asker’s face when I dare utter such an unconventional and unexpected riposte. Sometimes I would carry on with an extended answer, but I knew from the glaze over the asker’s eyes that that wasn’t a satisfying answer. Eventually I would say, “It’s okay, I’m fine.” After that we could all get on with our ‘normal’ lives. The thing is, I deal on a weekly basis with medical personnel of all kinds. Of course, they are as gripped by social convention as the rest of us, but it still throws me off with an oncologist asks me: “How are you, today?”

Just like everyone else, they seem to expect “Fine” as the appropriate answer. Of course, if I were fine, what the hell would I be doing talking to an oncologist about my chemo treatments? Obviously, “fine” is not appropriate as a response under the circumstances, but nor is asking “How are you?”

One time, a few months ago, I had a Zoom type meeting with an oncologist and he asked me “And what can I do for you today?” Well, that question kind of left me speechless, something that is quite an accomplishment if you know me. Of course, it’s a completely appropriate question if I’m in a retail store, walking up to a counter and a clerk asks me “And what can I do for you today?” or “What can I get for you today?” Yes, in that circumstance, this convention works for me, but when an oncologist asks me that question, I get flummoxed. In my usual smart ass way I get tempted to blurt out: “Well, you can tell me I’m cancer-free. How about that doc?” But then, things get awkward and embarrassment takes centre stage and nothing good comes of it.

So, being a sensitive kind of guy and always interested in having conversations go smoothly, my response to the oncologist that day was quite measured. He wasn’t prepared for the appointment, so all he did for the five minutes of the conversation was look at his computer screen, just glancing up every few seconds the camera in an uncomfortable way. He was probably having a bad day. In his line of business, bad days probably happen often, so I don’t take these things personally. In any case, I steered the conversation to my lab results, prognostications about future treatments, and about pain and exhaustion. As an aside, my experience so far is that oncologists don’t like to talk about pain. It seems to make them uncomfortable and fidgety. Tellingly, they leave pain management to GPs.

Well, to finally get to the topic of this post, I can understand their reluctance to talk about pain. It’s a ridiculous thing to talk about. It’s invisible, subjective, and it’s measurement borders on the hilarious. “So, Mr. Albert, on a scale of 1 to 101, how bad is your pain right now? Well, shit. Where do I go from here? Do I just tell them what they want to hear: “Oh, it’s about a 5.” “Okay, thank you, Mr. Albert. So the pain isn’t too bad right now then.” Note that last comment is made as a statement, not as a question. Asked as a question, I could answer something that is more akin to the truth than the bullshit conventional responses we are expected to give at these times. So I could say something like this, bear with me:

Well, at the site of my nephrectomy, the pain varies from 3 to 8 and in duration depending on my activity at the time. It can spike to 9 at times, just not right at this moment. My lower back is fine as long as I don’t move too quickly but that’s because of arthritis and disk degeneration. As you know, my Bortezomib induced peripheral neuropathy (BIPN) is neuralgic pain that is untouched by pain meds designed to deal with muscle or joint aches and pains. Right now, it’s at about a 7. My back starting just below my arms, and my legs down to my knees are burning. My left thigh is painful to the touch. I don’t know how to measure that. It’s a new thing for me. It seems that my BIPN somewhat attenuates during the day and I may actually be able to go to bed with it not bothering me much. At other times it’s excruciating and ridiculous. The pain at my right kidney is nasty at the moment, spiking up to a 7 at times. Lab tests tell us my kidney is fine so it’s the Bortezomib that’s the culprit, it seems.

Anyway, you get the picture. Describing pain simply and easily is impossible for someone with chronic and/or chemo-induced pain. No one can possibly understand how much pain I’m in or how much pain people with inflammatory illnesses and many other conditions suffer. It’s impossible for me to describe the various levels and types of pain I experience daily unless you’ve experienced it yourself in the same contexts that I have. Now, my GP takes my word for it. What else can he do?

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1The 1 to 10 pain scale: I thought I understood it somewhat until I had a talk with a palliative care physician who told me that a 10 is pass out time. I have never passed out from pain as far as I can remember although I may have passed out from deliberately taking a pass out dose of meds on occasion, the only strategy. There were times when I assumed that a 10 was severe pain, but not pass out quality. So, if I said I was at an 8 or 9, that meant that I was sorely distressed by it, but I was tolerating it. A 5 meant that the pain was bad, but not completely distracting. A 4 or below meant I was in some pain, but not too nasty, maybe a nagging, throbbing, but fairly mild headache. After talking to the palliative care doc, I had to revise my scale. Now a 5 is “I’m in pain and it’s no fun. Do something about it!” A 4 is “It still hurts pretty bad!” A 2 might be: “Okay, I can deal with this, but it’s still bugging me.” I haven’t seen a 0 very often, but it does happen periodically for a short time when I’m lying down and not moving at all.

One Step Forward and Two Back.

Yeah, you might say that I’m feeling less full of possibility and life today than I did a few weeks ago. I’ve written about this already so no use going over it again in detail, but it’s worth mentioning that a few weeks ago I seemed to have a breakthrough in my chemotherapy. I suddenly got more energy and was able to do physical activity like I had not been able to for months before. That was great. My lab results kept coming back suggesting that the multiple myeloma was getting beaten back. My lab results are still great. So, lots of reasons to be optimistic, cheerful, even. Then this happened:

A couple of weeks ago I started developing excruciating pain in my back and legs. Well, I’m no stranger to back pain. I’ve had back and kidney surgery, enough to leave me with chronic pain and I have arthritis and degenerative disk issues. I have lots of reasons to have back and leg pain. Besides, I’m seventy-three years old! But, this was different.

Pain from arthritis, degenerated disks and muscles can usually be mitigated by stretching, heat, that kind of thing. The pain I’ve been feeling for the past two, going on three, weeks is not affected at all by the kinds of therapy I would normally have applied to pain. This pain doesn’t originate in my muscles or in my bone. This is neurological pain and its cause is most likely one of my chemo drugs, bortezomib. This is the kind of pain that won’t allow me to sleep. This is the kind of pain that pushes me to double or triple my intake of opiates (hydromorphone), leaving me muddle headed and even depressive.

It’s true that the intense pain I felt a couple of weeks ago has attenuated to some extent so that I can now try to cut back on my pain meds to some extent. Still, last night after taking a pretty hefty dose of hydromorphone, I had to take even more because the pain just wouldn’t allow me to sleep at all after 2 AM. It’s evening now and I’m just now getting over my opiate hangover from last night. Tonight I will take half the dose of hydromorphone I took the last night, but I’ll also take acetaminophen because that seems to subtly help dull the pain as well. If I have to, I’ll take more hydromorphone, but grudgingly. I have reason to want a clear head tomorrow.

So, the reason I know that bortezomib is the culprit regarding my back pain is because I had a meeting with my oncologist in Victoria by phone last week and he’s the one who brought it up. He also indicated that he would communicate with my oncology team here in the Comox Valley to tell them to reduce my bortezomib dose from 1 mg/m² to .7 mg/m². I’m still waiting for that to happen but I’m hoping the reduction is cleared before my next injection on Thursday. There’s no guarantee, but the reduction in dosage may result in a reduction of my pain levels. That would be nice.

Okay, I’ve written about one step back. Now for the other step back. Once a month I get an infusion of a drug called zoledronic acid. It has a number of side effects: This from a website:

In rare cases, zoledronic acid may cause bone loss (osteonecrosis) in the jaw. Symptoms include jaw pain or numbness, red or swollen gums, loose teeth, or slow healing after dental work. The longer you use zoledronic acid, the more likely you are to develop this condition.

Osteonecrosis of the jaw may be more likely if you have cancer or received chemotherapy, radiation, or steroids. Other risk factors include blood clotting disorders, anemia (low red blood cells), and a pre-existing dental problem.

Other side effects include severe pain in the joints, bones, and muscles. Jeez. The main benefit of zoledronic acid for me is that it may prevent the lytic lesion in my right femur from getting bigger or just spontaneously breaking my leg. So, the oncologists carry out a cost/benefit analysis and they prescribe drugs based on the best possible outcome.

Now, however, I’m feeling some sensitivity in my jaws, both upper and lower teeth. That is very concerning to me. My oncologist suggested I consult with my dentist again and I’ll call his office tomorrow to see if I can set up an appointment, as reluctant as I am to do so in Covid Times. I’m not sure what he can do, however. I’m not sure the damage can be reversed, and zoledronic acid is not a drug one can stop cold turkey. I always prided myself on keeping my teeth in top shape and now I’m hoping to just keep them!

I called this post “One Step Forward and Two Steps Back”. The two steps back are about my experiences with bortezomib and zoledronic acid. The step forward is that the myeloma in my blood is pretty much gone. The course of treatment I’m on is very successful for me. I’m loathe to go off of it and so are my oncologists. So what do I do? I have another 18 weeks of chemo before I go off of it for who knows how long. I will go into remission but I’m also guaranteed to relapse. Only time will tell how long I’ll be in remission. It’s also guaranteed that I will die in the foreseeable future, even if that’s not for another ten years. Judging by how fast time has passed getting me to 73, I can only imagine that ten years will go by pretty quickly.

Is all the pain I’m experiencing now worth it? The existential questions about life and death still haunt me. What the hell difference will it make if I live another ten years or not? Whatever. Then I make a video about Carolyn’s gardens and we’re getting a puppy. What does that say about me and my questions?

I just hope I get some sleep tonight.

Garden Serenity Amidst Uncertainty and Rising Tension Everywhere.

Please view the video that is linked below following the map of the property.

It’s a video I produced of Carolyn’s garden over the past few days. I’m no pro. That will become obvious as soon as you start watching. However, I felt a real need to post something positive of something beautiful. Not only are we facing the difficulties and challenges of multiple myeloma at home as a family, but we watch the news and witness the social restructuring caused by Covid-19, and we see the US facing very difficult times, violent times. We have friends and family in the US and it gives us no pleasure to see that country embroiled in the kind of racist injustice and authoritarianisms that has led to protests and violence. The militarization of the police in the USA (and in Canada) which has been going on since 2001 can only be a sign that preparations are being made to go to war against the very people who pay the taxes that support the police and the increasingly totalitarian American government. It’s a very complicated, dangerous situation. It’s hard to figure out, and harder to predict what will happen next.

So, take a break, relax…

For a few minutes enjoy my amateurish attempt at video production. I made this video in part because the Cumberland Community Forest Society cannot hold a garden tour this year because of Covid-19. Mostly, I wanted to celebrate Carolyn’s artistry in the garden. This video is a poor substitute for a garden tour, but if you enjoyed this video, please consider donating the price of a garden tour ticket to the Forest Society. Here’s the website address: https://www.cumberlandforest.com/protect/

Map of Property

This map should help you get oriented to the property. Carolyn created it for a garden tour a few years ago and edited it just now.

Now watch Carolyn’s Fabulous Cumberland Spring Garden 2020